Since its inception, MDA has invested more than $1 billion in neuromuscular disease research to uncover new treatments and cures. In 2016 alone, MDA awarded 66 new research, development and research infrastructure grants with a total funding commitment of more than $17 million. These and other MDA grants fund research projects designed to uncover the . . .
This summer MDA challenged our families, friends, sponsors, staff and others around the nation to share their stories about living life without limits despite the challenges of neuromuscular disease. Some shared moments tied to pursuing an education or career that was thought to be out of reach. Some talked about skydiving, hiking or running a . . .
Paul Robertson can tell you how falling down can change the course of your life, twice—for worse and for better. For many years, he experienced a series of trips and stumbles, small difficulties getting around and a propensity to catch his feet and toes. His sister Nicole, 11 years younger, had similar tendencies. Maybe they . . .
At the age of 2, Lorraine Woodward was diagnosed with limb-girdle muscular dystrophy (LGMD), and doctors told her parents that she would not live past 16 years old. Now, at age 54, she has more than outlived those early predictions and made a successful life as a wife, mother, volunteer and entrepreneur. From an early age Lorraine . . .
Thirteen-year-old Dana Parrott has a live unlimited motto, which she faithfully follows. “I may have muscular dystrophy,” she says. “But muscular dystrophy don’t have me!” In so doing, Dana is showing the world that her limits don’t define her. To every doubter and every “you can’t do that,” she says, “watch me.” Diagnosed with limb-girdle muscular dystrophy (LGMD) . . .
When Kathy Payette was in eighth grade, she started experiencing unexplained muscle weakness. Over a period of three years in the mid-1970s, she visited several doctors, all of whom were puzzled by her symptoms. When she was 17, Kathy spent a week at the Mayo Clinic with a team of doctors who concluded she had . . .
Muscular dystrophy couldn’t keep Paul Robertson from the water, and he doesn’t want muscle disease to stop anyone from doing what they love. “When you get on the water, it’s a sense of freedom. It’s just the thrill of the bite, the thrill of the competition, the thrill of being on the water,” the lifelong . . .
Criss Hartzell, professor of cell biology at Emory University School of Medicine in Atlanta, Ga., was awarded an MDA research grant to elucidate the mechanisms underlying type 2L limb-girdle muscular dystrophy (LGMD), caused by mutations in the ANO5 gene. Hartzell will examine the role the ANO5 protein plays in trafficking and fusion of cell membranes . . .
Jessica Albanese, Age 16 New Castle, DE Home and Family Jessica lives with her parents, younger sister Victoria, and their chocolate lab. Diagnosis Jessica was diagnosed with Limb-Girdle Muscular Dystrophy in 2008 at the MDA clinic at A.I. duPont Hospital in Wilmington. Limb-girdle muscular dystrophy (LGMD) is a group of disorders affecting voluntary muscles, mainly . . .
Noah Tompkins, Age 15 Bloomington, IN Home and Family Noah is the son of Darla and Doug Tompkins. He has two brothers. Diagnosis Noah was diagnosed with Limb-girdle muscular dystrophy (LGMD) in October 2015. Limb-Girdle muscular dystrophy isn’t one disease. It’s a group of disorders affecting voluntary muscles, mainly those around the hips and shoulders. . . .
